My Journey with CP: Robert Escandon Part 1/3

My name is Robert Escandon. I was born in California in 1973.  I don’t remember much about my infancy but my unblemished memories begin when I was about 4.  Sometimes I can remember bits of my life before that.  I am a believer in Christ Jesus.  I also live with cerebral palsy. I do not see a contradiction. I was born but later developed (spastic diplegia) cerebral palsy (cp).  I wasn’t born prematurely, however, through Cesarean section. I wasn’t in the correct position when I was to be born and the umbilical cord was wrapped around my neck.  Although the doctors noticed there was something abnormal, I was allowed to be taken home. At two months I was taken back to the doctors for, what is now known as hypothyroidism. During my visit, I was taken to the hospital because I had difficulty breathing which affected my brain through a lack of oxygen. This lasted a couple of weeks (on and off). I was given last rites before the answer was discovered. (As a result, California began testing all new babies for thyroid problems.) I came home with cerebral palsy but as a baby, the cp was hidden. It was when I began missing developmental milestones like sitting up and staying up and walking that my parents took me to physicians who was treating me for hypothyroidism, at the age of two I was diagnosed with cerebral palsy.  The prognosis was that I was going to be a dwarf and mentally disabled. The physical therapists (PTs) had to rule out other types of cp as they determined my relative ease to write my name at age four, ruling out quadriplegia. At four years old, the type of cp was diagnosed as spastic diplegia. I walked with a walker, then with metal braces until November 1981 when the PTs decided I no longer needed them; this was prior to moving to El Paso, TX. When I was 7-11, I grabbed two long socks together, tied them to produce a much longer “sock”. I grabbed both ends of the sock and looped the other end around my foot while sitting. I then pulled my foot into position. Then I relax the foot and try to do it without the socks. I’d repeat it several times. As time went on (years), I was able to move my foot more until I could do it without assistance. Simultaneously, when I sat for long periods, like school, ever once in a while I’d move my foot with my will not my hands. This became a habit enough to where I rarely had to reposition my foot; it became automatic. Now, I don’t have to consciously think of it as much. It still does pronate but most of the time, it’s as I sleep. When I wake up, I don’t need to stare at my foot and concentrate like at the beginning. I know it repositions itself because sometimes I can feel a pop. That pop though could be because I’m getting older.  Right now, it takes more effort to revert back to how my foot pronates, or even to allow it to relax so it pronates on its own.   I think what happened is that the physically repositioning coupled with mentally willing it into position redirected the nerve cells to fire differently so it can be possible to maintain a correct position automatically with years of retraining the brain – as an adult I learned its name: neuroplasticity.  I was doing neuroplasticity before I even knew its name or if it was possible. I did many exercises with and without the PT.The way cp affects me is the muscles in my legs are tighter or spastic than a non-cp person’s.  This tightening of the muscles, particularly my legs, makes my body move in jerky or spastic movements; this may make me appear to have a limp or when I was younger I walked much more different than the average child. I wore metal braces on my legs and shoe insoles most of my childhood.  I also have balance problems; it’s very easy for me to fall on my own and strong winds can also be a culprit. My muscles get tighter during the winter months because of the cold. As long as I’ve been alive, I’d have cuts on my knees and elbows from falling.  On occasion, my muscles move involuntarily giving the appearance of being startled.  I must be honest, I get more startled at the involuntary movement than what seemed to cause it.  Some people say it’s the Moro reflex; a reflex present at birth that goes away in children with no cp.  However, children who do have cp often keep the Moro Reflex probably due to the part of the brain that normally stops it is damaged and therefore cannot stop it. My body reacts to touch as if it hurts, however, I have been blessed with a high tolerance for physical pain; it doesn’t hurt me if someone touches me.  There are two reasons for this one of which I will get into later. Not everyone with cp is the same and those who have been diagnosed with the same type still differs in severity and other factors.  (Not everyone with cp still has the Moro reflex). Let’s not forget, I have a low active thyroid (hypothyroid) which is congenital and I have above average hearing. I was also born ambidextrous, however, for fear that I would be seen as a “freak”, I was taught, through conditioning, by teachers to use only my right side.  Despite my diagnosis being diplegia, meaning it affects the lower half, after living with cp for more than 40 years, I know cp affects my entire body, involuntarily and voluntarily.There is no cure; only treatments. Cerebral palsy is defined as brain damage to the region of the brain that controls muscle movement and control.  Since it is damage to the brain, it is permanent. 

Me graduated from College December 5 2005.

Each person with cp can generate about $1.75 million a lifetime into medical costs (there are approximately 17 million people with cp in the world. U.S. 640k.), physical therapy costs, occupational therapy costs, pharmaceutical costs, other miscellaneous costs depending on the severity of cp, individual needs and if there are other concurrent conditions or disorders. Some point to stem cell research since cerebral palsy is a brain disorder. I have found that consuming alcohol loosens the muscles and perhaps the brain controlling the spasticity of my leg muscles. However, I cannot nor will not pick up a habit-forming addiction to walk better; it’s a big cost to bear but I’d rather walk the way I do than walk better and become dependent on alcohol.

.me with long hair as a baby.

Published by McKenna_Thrush

You may be wondering what makes our relationship so unique... Cole has Asperger's, and I (McKenna) have Cerebral Palsy. The challenges of life, coupled with our disabilities can make for a pretty interesting day-to-day life. In fact our life sometimes seems like anything but day-to-day. ‚ÄčI suppose the same can be said for our relationship from the beginning. We started dating just over 2 years ago and decided that we wanted to have a courtship than your typical dating relationship. The purpose of showing people our lives, is to show people that disability doesn't need to stop you from reaching your goals. You can still go to college, live independently, get married, and even have a family regardless of the cards you are dealt. We may not be your typical couple. we may not live "normal lives" but that doesn't stop us from living the best life we can!

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